more_vert
Most research participants want to know the results of the studies they contribute to, yet many never hear back. A new global review highlights the ethical, practical, and trust-building benefits of results sharing, as well as the barriers that keep it from happening.
When patients volunteer for medical research, they give their time, data, and often a piece of themselves (a blood or tissue sample for example). Yet all too often, they never learn the overall outcomes of the studies they helped make possible. We are talking here about aggregate results — the key overall findings of a trial or study — rather than individual test results.
Australia’s National Statement on Ethical Conduct in Human Research makes it clear that institutions and researchers are responsible not only for the ethical design and conduct of research, but also for the dissemination of results. The 2024 Declaration of Helsinki echoes this, stating that researchers must engage meaningfully with participants before, during, and after research, including enabling them to understand and disseminate results.
Despite this guidance, sharing aggregate results with participants remains inconsistent. Simply publishing an open-access paper is not enough — most participants will never come across it, and even if they do, the language is rarely accessible. What matters is making results understandable and delivering them in ways that reflect participants’ preferences, whether that is through written summaries, community meetings, or other formats. Participants expect transparency and want to see how their contribution made a difference. At a time when building a trusting and equitable relationship between participants and researchers is more important than ever, sharing research outcomes is critical.
What our review found
To explore current practice, we conducted a systematic review of 96 studies published between 2008 and 2025 that covered aspects of dissemination of results to participants across both high and low income settings and from a wide range of disciplines, including cancer and infectious diseases.
A consistent message emerged: most participants expected findings to be shared, regardless of whether outcomes of the research suggested a benefit or not. Many participants considered it a basic right, tied to being treated with respect and transparency.
Researchers agreed that dissemination is important, but practice lags behind. For example, in one US survey, two-thirds of researchers believed results should always be shared, but fewer than one in ten had concrete plans for doing so.
In high income countries, results were typically mailed in lay summaries or letters; in lower income settings, workshops or group meetings were common. Creative alternatives also surfaced — from comics to short films and even poetry.
Dissemination improved health literacy, strengthened trust, and encouraged future participation. Community meetings helped to challenge misinformation and foster dialogue.
Dissemination requires time and resources, yet it is often not explicitly costed in research budgets. Re-contacting participants long after a study is completed can be difficult. Researchers also found that their institutions provided limited guidance. Some researchers worried that sharing results may confuse or distress participants, or assumed people are not interested, despite evidence showing that most participants welcome this information.
Together, these challenges explain why so many researchers support dissemination in principle, but fewer make it routine practice.
Why it matters
Dissemination is not just “nice to have” — it is central to ethical research. Globally, where public trust in science has been tested, communicating research findings is one way to strengthen the social contract between researchers and participants.
After publishing our review, colleagues in different networks told us that dissemination may actually happen more often than reported, but it is rarely documented. Valuable lessons are then lost — what worked, what didn’t, and how approaches were adapted to context.
This invisibility is especially concerning in diverse communities. In Australia, for example, dissemination strategies must be tailored to multicultural populations and First Nations communities. Our own recent work in Ethiopia illustrates why this matters. There, we tailored dissemination activities to patients’ preferences, inviting them to a community meeting about the outcomes of a large multi-national malaria trial. Many expressed surprise at the scale of the study — they had not realised they were part of something this large. Sharing aggregate outcomes not only gave them knowledge but showed the collective impact of their individual contribution.
Encouraging researchers not only to undertake dissemination but also to talk about it — in publications or conferences — will be crucial for building a stronger culture of learning and making dissemination part of routine research everywhere.
What would it take?
- Early planning: integrate dissemination into study design from the start.
- Funding and support: allow for, and require, appropriate resources in grant schemes.
- Institutional guidance: provide frameworks and templates for communication.
- Participant preferences: actively determine how participants and communities want to receive results, and tailor dissemination accordingly.
- Recognition and incentives: make dissemination efforts visible in the academic discourse and incentivise researchers to do so (eg, through promotion criteria).
By learning from each other and documenting experiences, researchers worldwide can move dissemination from patchy and ad hoc to a standard part of ethical research.
Looking ahead
Dissemination should be meaningful — tailored to participants and communities and delivered in ways that are accessible and useful. It is as fundamental to research as consent or ethics approval. Funders, institutions, and ethics committees need to provide the time, resources, and guidance to make it possible.
Done well, dissemination closes the loop: giving back to participants in a way they can understand and value, while strengthening trust and reinforcing the link between research and the communities it serves. This is particularly important at a time when public mistrust in science is high, and researchers need to demonstrate transparency and accountability.
Mary Bagita-Vangana is an obstetrician/gynaecologist and Master of Clinical Research graduate from the University of Melbourne.
Holger W. Unger is an obstetrician and gynaecologist at Royal Darwin Hospital and a researcher at Menzies School of Health Research.
Kamala Thriemer is a global health researcher at Menzies School of Health Research, specialising in clinical trials.
Thank you for this article. I have volunteered for our local health research organisation for many years – a highly regarded, professional institute – given blood and other specimens; done brain function tests; MRIs; asthma tests; completed food diaries – even done a scratch and sniff test. All have taken considerable time and been enjoyable because I like to contribute and talk to the researchers, but I have never received a report of my own or the aggregate results of a study. It would be wonderful to have some feedback.